IS DYSLEXIA A DISABILITY?
Is dyslexia, or as I now refer to it, difstypro, a learning disability, learning difference, curse, gift, problem, malady, fiction, condition, diagnosis, identity, and/or this thing called neurodiversity?
To answer the question fairly, it depends on who you ask.
For me, at one time or another, it has been all of the above.
My friend Daphne Uliana says, "If you meet a dyslexic, you've met one dyslexic."
Difstypro/Dyslexia comes in lots of flavors and opinions and may piggyback with something else such as ADHD. Considering all that, the only opinion that matters is that of the individual and how he or she views their current situation.
Today, in my mid-fifties, I have come to recognize, understand and utilize what I consider the unique abilities of my difstypro mind. I feel I have received a gift and that is why I am at such odds with the word "dyslexia."
A Wrench Occasionally Thrown My Direction, But It's No Biggie!
There are times when being difstypro can still throw a wrench at me, but for the most part, I've learned to compensate for what I refer to as the "downside." Labored reading, terrible spelling and trouble producing legible handwriting are still challenges for me. However, I've learned to use technology to compensate for almost every situation. Writing with my voice and reading with a combination of aural and visual skills is so easy that I probably read and write with that method more effective and efficient than traditional coders.
Grammarly.com is a writing software application that syncs up with my Apple dictation software. It provides real-time direction in the areas of spelling, grammar, and syntax. As a writer, I provide imagination, memory, and wordsmithing. I'm a fan of Grammarly (just one of many choices). It's far from perfect and still needs improvement, but I have made huge advancements by utilizing the software.
I should also point out that I pay for the constructive criticism of a human editor who is a much smarter writer than I'll ever be. I often tell would-be writers, who would like to write but feel they don't have the skills to hire a great editor, that great editors are like boxing coaches who could get in the ring and knock the snot out of the opponent but instead find joy in returning you to consciousness with a few good smacks, pushing you in for another round, cheering you on, and letting you have all the glory.
My only remaining problem areas as a writer are:
1. Keeping anxiety at bay, as stress throws the entire creative process off balance and does not mix well in my difstypro noggin.
2. Filling out forms. But I'm not bashful about asking for a reasonable accommodation under the Americans with Disabilities Act.
A perfect example of this happened earlier this week in the way of an administrative problem with the IRS. I am required to fill out a simple one-page questionnaire that just so happens to come with a 310-page instruction manual. Reading a voluminous IRS publication and transferring that knowledge into a form would be laborious for anyone. I could ask the IRS to send me the manual in an audio format. However, seeing as I would be hard-pressed to produce legible print inside the boxes and lines of the form and an IRS employee would be equally hard-pressed to decipher my handwriting, I asked for a reasonable accommodation and the IRS agreed, no questions asked. Next week I have an appointment to visit an IRS specialist near my home who will fill out the form based on a verbal question and answer exchange. I think it'll be fun; maybe I'll make a new friend!
With the downside of having a difstypro mind handled by technology and the occasional request for reasonable accommodation, I am free to enjoy the perks of my wonderfully weird and creative mind! After fifty-plus years, I'm finally able to be the happy little kid I've always wanted to be! It has taken a long time to get here, and I acknowledge that most children have not had my benefit of time, trial and error, the aid of technology or the one-on-one literacy tutoring that I was afforded later in life. While I'm enjoying my do-over on childhood, we should also note that I function as a grown man with the prerogative of making decisions for myself. I can (and have) politely said yes, no, maybe, let's try this, here's what works for me, sure, no way, or I don’t think so. If someone argues with me and I don't agree, it is of little consequence because I’m an adult who controls my own life. The average fourth grader doesn't have the same luxury of voice and may be under the direction of, a very nice, well-meaning grown-up who is innocently but negatively, impacting the outcome of that kid's future. In short, while I can use my adult voice to express myself confidently even when frustrated, a child who expresses the very same opinions or concerns is probably going to be viewed as defiant and worthy of punishment for their disrespect. It happens thousands, if not millions of times per day and is a very good indicator that society is not listening when people rightfully advocate for themselves.
While I see my neurodiversity as a gift, I never criticize those who feel it is a curse. On behalf of those individuals we have much work to do, and when I say "we," that includes me.
Ask a Sixth Grader and Her Parents
If you ask a sixth-grader who can't keep up with her peers, doesn't have access to tech, proper curriculum, a specialized teacher, and who is being sent to homework hell every night, she will tell you it is a horrible disability.
If you ask the parent of that sixth-grade student, they will also tell you about their nightly trek to the fiery pits of homework hell. Moreover, they are going to tell you about their child's anxiety that, depending on the circumstance, ranges from mild to off-the-charts. To them, it is a disability that is stealing their family's quality of life.
It is nearly impossible for these parents to dream or take joy in all the possibilities for their daughter's future when they're dealing with serious anxiety and self-esteem problems in the here-and-now. Mom and Dad are focused on quelling tears and getting her a good night's sleep so she can check into her private prison again tomorrow. It shouldn't be so hard! It doesn't need to be this hard for a family! The vast majority of these children are of average or above average intelligence, yet the one size fits all model at many schools makes them a square peg pounded, day after day, into a round hole.
Let's Ask Joe
Ask my friend Joe, (not his real name) who is working a job he’s not fond of because he couldn't get into college thirty years ago, and he might tell you it's a curse and I respect his take on the matter. People try to hang the hero sign around my neck all the time for my advocacy work. Joe's the hero, not me. If you want to hang a sign on me, it should say "Very Lucky."
Joe has three kids and gets them every other weekend. He sends his child support on time/every time and is working a second job he doesn't like because he wants his kids to go to college. Joe is forty-six years old and reads and writes well enough to get by on a day-to-day basis. Here's the real zinger: Joe is one of the smartest guys I’ve ever known. He dropped out of school at sixteen and got a decent job at the shoe factory. Fifteen years later, his job was outsourced, his wife left him, and his self-esteem took a big hit. As we talk about kids who need us, let's remember my pal, as not just a cautionary tale but as a grown man who also needs us.
Let's Ask The Law
Ask the people at the ADA (Americans with Disabilities Act) or IDEA (The Individuals with Disabilities Education Act) and they will tell you it's a disability. We talked about this earlier, but it's worth repeating. I'm not about to argue with those two Acts. They recognize dyslexia as a disability and provide guidance in the form of laws and accommodations meant to protect neurodiverse individuals as they traverse the innocent ignorance that is so prevalent in geographic pockets, select school houses, society, and government. It's great to have these Acts in our toolbox; however, as part of our reform efforts, we must insist that these laws have teeth. It's not enough to decree law; governments must also fund enforcement. Non-enforcement of laws that are meant to provide protection and fairness only leads to more problems.
What Does Ben Think?
I met Ben during an invitation to speak in Texas. Ben was a happy and well-adjusted fourth-grader at a public school north of Dallas. He explained to me that dyslexia is a learning difference with many positives. His mom told me Ben, receives Orton-Gillingham based reading instruction geared toward his strengths. I also met his teacher, a big, burly, good-natured fellow who has a special connection to his students. Ben said he loves reading class because it's always fun. By the way, Ben is a regular on the honor roll.
And Then There Are People Like This
Cher, Tom Cruise, and Whoopi Goldberg!
Steven Spielberg, finally identified as dyslexic at age sixty, said in an interview that going to the movies as a kid was his escape from academic troubles. Imagine that!
Entrepreneur Sir Richard Branson, speaking to Bloomberg News, credited neurodiversity for his effectiveness in delegating and communicating with others.
Dr. Toby Cosgrove, the president of the Cleveland Clinic, told C-span that he has come to think of dyslexia as a gift because it allows him to see things from a different point of view.
It Doesn't Need to Be So Hard
When I look back over my formative years, I shake my head and think it didn't have to be so hard.
PLEASE ACCEPT MY APOLOGY, AND THEN WE CAN GET BACK TO NEURODIVERSITY
I received an official identification as an individual with Dyslexia (or as I now say, difstypro) at the old age of Twenty-Nine.
Since that time, and very innocently, I have said some really dumb things. In fact, my own ignorance is the biggest and nastiest of all the ignorance/alligators I've ever had to wrestle.
Disclaimer, (but not an excuse): In my defense, these are things I've said based on a steady diet of misinformation I devoured in trying to understand who and what I am.
"I See Things Backward?"
Shortly after being identified, I confided in a teacher/friend that I had been "diagnosed with something called dyslexia."
"Oh, that's no big deal. It just means that you see things backward," she said.
"I do?" I asked.
"Sure, you just don't realize it because you have always seen the world in reverse, and at this point in your life it seems normal to you," she said as a matter-of-fact.
I walked around her kitchen trying to catch myself seeing things backward. But according to my friend, my thirty-year-old brain was so accustomed to seeing things backward that it was "set in stone”, and I'd never have the ability to change it.
Let me be very clear: as it turns out, I DO NOT see things backward.
No Picture In My Head
At about that same time that my friend convinced me I saw things backward, I visited a psychologist on a weekly basis who was trying to get my head screwed back on straight. I was an angry young man presenting with a second-grade reading and writing level.
He told me, "The cause of your dyslexia is that you have no visual memory and cannot see pictures in your head like 'normal' people.”
“Let's do an exercise.
I want you to close your eyes and picture the house where you grew up.
Can you see your house, Brons?"
"Well, I think so. It's stone and has a red roof and white window panes..."
He interrupted me. "But can you see it like a movie playing in a theater? Can you see it as clearly on the back of your eyelids as if you were looking at the big screen?"
"Well, yes… I think so. Maybe not? I told him.
"That is your problem; you have no visual memory. You depend on your inner voice as your memory," he explained.
"You can't spell because you can't picture the word you want to spell."
I left the shrink's office that day and spent the next several years erroneously explaining "dyslexia" to family and close friends like this:
"I see everything backward, even though I can't tell it's backward, and I can't see pictures in my head like 'normal people,' and that's why I can't read and spell as well as 'normal people.'
In time, I realized that the psychologist was full of baloney. I not only see pictures in my head but like many difstypros, I think in pictures. As far as having a movie projector brain shooting highly detailed, cinematic pictures on to the back of eyelids, I’m sure they exist but I've yet to meet anyone with such a gift.
I Feel So Silly!
For so long I wanted to be "normal." I was ashamed that I had graduated dead last in my high school class. I was upset that I didn't go to college and law school. I was angry that I wasn't the powerful attorney Dad wanted me to be.
I went looking for a "cure." I confided in friends and family that I felt broken and I wanted to be fixed.
I laugh now because I finally realize I'm not broken, nor do I need to be fixed.
On the road to understanding, I've had a few fender-benders and have been a party to spreading common misinformation regarding neurodiversity, and for that, I plead guilty and am truly sorry.
You Calling Me An Oxymoron?
For as much as I loathe the word dyslexic, I often identify as a dyslexic author and then wait for people to tilt their heads like confused Golden Retrievers. It's quite the conversation starter and makes people ask the obvious question, "how's that work?"
I want kids, moms, dads, grandparents, teachers, school admins, and politicians who see that phrase associated with my work to do a double take. Yes, I'm a professional writer who has a good bit of trouble reading, writing, and spelling by conventional means. Then again, I'm anything but conventional, and I'll be d*mned if the word "impaired" will be used to define me nor will I apply it to anyone else.
Bringing the conversation around to Neurodiversity makes my heart sing! "Neuro," in this case refers to the brain as the master of the human nervous system. Do I have a brain? Why, yes I do, a fine one capable of good things, thank you. And is it different, as in diverse? Oh, indeed, it is quite different, but not defective.
"Diversity!" Now, there is a word that gives me goosebumps! It conjures up images of heroes peacefully doing battle for what is right and just. I see the faces of brave souls on a Selma, Alabama bridge pressing on in the quest for equality. I imagine farm workers walking out of California fields in the name of fair wages and working conditions. I see fearless American women enduring prison simply for the democratic right to cast a ballot.
Diversity gives me what I always dreamed of as a boy: the opportunity to fight for what’s right! It's a word that gives me the courage to stare down injustice. Diversity: it's just a word, but it's a word that makes me twelve feet tall because I'm standing on the shoulders of the very giants who gave meaning to the word.
Diversity speaks to our humanity, mutual respect for one another, cultural curiosity, and everything thing about you and me that is different yet makes us the same. Diversity is lifting my glass and laughing with cherished friends. It means, "it's not a big deal (in a good way) that we're different, and at the same time it IS a big deal (in a good way) that we are different."
Take it from me and others like me: a primary definition used to describe any individual that denotes a perceived weakness or imagined inferiority is soul crushing. I hear people speak of struggling readers, slow children, disabled kids and the learning disabled as if those individuals lack any abilities, talents, or gifts. That type of rhetoric, even in the kindest terms when done very innocently, causes a child to question their self-worth. In a malicious manner or done as a punishment, it destroys a child.
Neurodiversity? Really? Yes, Really!
Not all that long ago, and in a matter of just one day, the recording of a single word sparked a great debate that took root and raged across the globe. A year or so before that a photo of a dress sparked a similar debate. Those debates proved the concept of Neurodiversity. Some brains visually process the dress as blue while others vehemently declared the dress was gold. In the audio version I spoke of, which camp were you in? Did you hear Laurel or Yanny?
There are seven billion people on this planet, and the one thing that makes every one of us the same is that no two of us are the same.
My friend, Lily, is a brilliant medical professional who was kind enough to share her lab result from the DNA testing company of 23AndMe.
Lab results show that Lily is mostly of Irish decent with a healthy dose of German ancestry. There is a sprinkle of Scandinavian, a dash of Italian and a few other European ancestors in the recipe that makes up her individual American melting pot.
Lily also shared with me that scientists have identified her as having more Neanderthal genes than ninety-two percent of other DNA profiles on record with the company. Most of us assumed that Neanderthals were a species of humans who died out thousands of years ago. I guess not, as this rather diverse type of human is alive and well in about four percent of Lily's genome, and that can only mean that Homo Sapiens and Neanderthals found each other sexy.
Beyond that sordid romantic tidbit of prehistoric drama, Lily's DNA testing correctly predicted that she is likely to have wavy hair, fair skin, blue eyes, freckles and an increased risk of sunburn. The biggest/ happiest news, according to the test, is that Lily is unlikely to develop breast cancer or Parkinson's disease. YAY!
DNA testing went deep inside Lily's brain processing center to tell us that her brain processes the taste of sweet snacks as more enjoyable than salty snacks.
Are you telling me that some brains perceive ice cream as more delicious than salted cashews and vice versa? And if so, could genetic codes within brains cause people to prefer country music over rap or have a preference for the color green over purple? What about the smell of lilac over honeysuckle?
By the "standard" method of learning to read and write some kids, as one teacher told me, "can pick it up in no time while other kids need a different method to learn simply because their brains are different."
Lily, as I said, is not a big fan of salty snacks; her brain prefers sweets.
Little Johnny's brain is not a big fan of standard reading instruction; his brain prefers Orton-Gillingham.
Could it be that simple? YES! For the love of God, YES! YES! YES! We don't have to make it so hard!
Did you ever notice it is easy to learn something you enjoy and hard to learn something you don't? There's a reason for that.
More On The Topic Of Diversity/Neurodiversity
I'm willing but embarrassed to admit that in a misguided attempt to elevate my C.Q. (Coolness Quotient) I attempted smoking as a teen. No matter how hard I tried, I could not convince my mind or body to accept the unnatural and counterintuitive process of drawing smoke into my lungs. The coughing, gagging, and throwing up was the natural rejection of a process that obviously made no sense to my brain and related systems.
There are particular foods that certain individuals will spontaneously regurgitate if forced to eat. Alcohol is often sacrificed to the Porcelain God when rejected as an illogical substance introduced to the logical structures of a human being.
I love Gatorade; Fierce Green is my favorite flavor. I drink it all day, every day. A friend thinks this drink is repulsive. She objects to the bright green color, saying it reminds her of antifreeze. I enjoy its fluorescent green sparkle. She says the flavor is too sour and syrupy, which is the very same reason I like the taste. This friend (okay, it's Lily!) and I have lots in common and agree on just about everything from most foods to travel to TV shows, but when it comes to Fierce Green Gatorade, her brain processes it differently from mine. Let's revisit the origin of word "dys" in "dyslexia" that translates in English to "impaired and or abnormal." Now, consider that green Gatorade is very popular. Let's even speculate that at least eighty percent of American beverage consumers like it, yet my friend can't even swallow the stuff. Does that mean she is "dys" (abnormal or impaired) when it comes to drinking Green Gatorade or does it quite simply mean that her brain processes it differently from most people?
In conjunction with writing and broadcasting, I've made a living for over twenty years as a keynote speaker. There was a time when I was terribly nervous in front of a crowd, but no longer. I taught myself some surprisingly easy strategies that alleviated my fear. Nowadays, the bigger the crowd, the better: let me at them!
I love sharing thoughts and making people laugh, but mostly I like presenting new ideas.
According to a 2014 article in the Washington Post (citing a survey by Chapman University), the fear of public speaking is the most prevalent phobia in America.
Think about it for a moment. Do you get nervous, or have you ever been nervous, at the thought of giving a speech?
If you flip open the most recent publication of The Diagnostic and Statistical Manual of Mental Disorders (DSM-V), you will learn that a phobia is considered a disorder. If you have a fear of speaking in public are you abnormal and impaired or does your brain just process the notion of talking in front of a crowd as frightening? The bigger question is can you learn to deal with whatever is going on in your brain and actually enjoy public speaking? I did!
Did you know some people enjoy the odor of skunk, mothballs, mildew, gasoline? Others hate the smell of flowers, freshly baked bread, pine. Are you impaired or abnormal if you are drawn to the smell of skunk? What if you find your neighbor's rosebush an affront to your olfactory senses? Do these things mean you are defective or are you just different from most in these regards?
I'm not a clinician, but I don't think people who get nervous when speaking in front of a crowd are broken human beings.
But Why Aren't We All The Same?
Why is someone a great jockey but not well suited for the NBA?
Why do some people go bald and some don't, and is it a disability if they do?
Why are people with red hair more apt to get a sunburn than people with brown hair?
Why do women typically have a more advanced olfactory sense than men?
Why are some people nearsighted, others farsighted, while yet others have 20/20 vision?
Why do some people have a natural talent for singing and others have none?
The answer to all these questions is because we are all engineered differently.
My brain is designed to process information differently from people who use conventional methods to read a new book every week. I use a less conventional method of reading but still read at least one book per week in the form of an audiobook. Based on book discussions with friends it seems I may have an advantage over them regarding retention. However, I never bring that up in the conversations. Okay, maybe I did once or twice. Let me have this little win.
“WHAT DO YOU SEE, OR NOT SEE, THAT MAKES YOU DIFFERENT FROM US?”
It is the most frequently asked question when I'm doing Q&A with an audience.
Teachers, mostly, ask this question; their curiosity often comes with a look of genuine concern. The expression on their faces is identical whether I'm in Lacrosse, Wisconsin or Tempe, Arizona. Their eyes speak to the ongoing bewilderment they experience as they view the differences between neurotypical and neurodiverse students. After so many years of teaching, they are still in awe of these gifted children who have difficulty grasping mainstream curriculum for reading. They've dedicated their lives to trying to understand and teach these kids. They want to reach them.
They ask me, "As a person with a dyslexic mind, what do you see, or not see that makes you different from us? What is it like to be dyslexic?"
How can I know the difference? I've never experienced the world through anyone's senses but my own.
For the longest time, I didn't know how to answer the question. Now, I'm ready to take a shot at it.
The greatest teachers among us teach because they answered a calling. They were born to be teachers. They deserve an answer, and I have worked very hard at developing one for them. Most of them have seen the impressive brain scans, the associated studies, and have read the scientific articles. This is all well and good, but they want to hear it directly from a real live alligator wrestler.
But Instead Of Asking What I See?
The question should be: how do I sense my environment and process the information I encounter differently from someone who is neurotypical? Then, what do I do with that information? I can answer that, but I can only answer it for myself. While there are many similarities between people with dyslexia, we must revisit Daphne Ulina's statement; "If you meet a dyslexic, you've met one dyslexic."
For years I've studied and hypothesized, asked questions of friends and family, compared notes, hypothesized some more, asked more questions, compared more notes and lain awake at night wondering and pondering. I've experimented, chatted with countless subjects, and aggregated personal data (chatting never gets the respect it deserves in the scientific community, nor does lying awake at night).
I'm finally ready to answer the question by asking more questions— with the understanding that I can only speak for myself.
In my search for answers, I reversed my focus from what I do poorly and instead placed my thoughts on how and why I perform certain tasks well.
I used to believe that my brain excelled in processing certain forms of data (the perks of my difstypro/dyslexic mind) in an attempt to compensate for a perceived deficit.
However, what if I turn that theory on its head and approach it from a whole new angle?
I'm exploring a new narrative that changes the conversation:
FROM: My brain processes certain data exceedingly well as compensation for a deficit.
TO: I have a brain that processes data in a unique way, does it exceedingly well, but is very reluctant to process information that it perceives as utter nonsense or unreasonably complicated.
In other words, what if my mind stubbornly has a mind of its own? Hold on to that thought and stay with me here!
Science has long generalized that people with my brain type are big-picture thinkers with vision and long-term planning skills. Research performed at the University of Wisconsin for a 2003 study revealed that people with dyslexia super-excel in the area of big-picture decoding. Please allow me the liberty of saying that is a correct statement relating to my perks as a difstypro/dyslexic person. I have concluded that, for me, vision and long-term planning skills come from an efficient, no-nonsense examination and use of data.
I like to think that my brain can quickly "clean house" as I analyze and plan. My imagination "pictures" the area between my ears as a collection of subsurface catacombs such as one might find under an old historic building (used for archival purposes, not human burial). Each of the brick archways tunnel back farther than the eye can see. These tailor-made spaces are perfect storage for memories, moments, tools, skills, talents, and lessons learned. It is here, in this well lit, meticulously clean, and pleasantly cool underworld that I sort and prioritize the data of my life. It is my workshop, the go-to place where I examine everything with the goal of gaining a better understanding. Firstly, I picture every memory in how it is stored. It may be on shelves, in unique bins, or in nooks and crannies. Red Folgers coffee cans hold overheard conversations between Mom and her best friend, Nancy. Go-Jo brand hand cleanser buckets and metal barrels store my time with Dad and all things Mobil Oil. Thousands upon thousands of repurposed vessels from bottles and jars, wooden boxes, and canvas bags line the shelves in the catacombs. This is also a practice I perform in my real-life space. My friends and family have a good time with the way I'm always on the lookout for vessels, boxes, cans, cases, trunks and like items to help me neatly categorize and store my life.
But Back To The Catacombs
That catacomb over there finally has everything nicely dealt with and stacked away in metal school lockers; it took a while.
I describe the collection of catacombs as clean and orderly, but ...
Just as every well-ordered kitchen has at least one junk drawer, I have a few junk catacombs where I temporarily deposit anxious memories that I'm having a hard time dealing with and figuring out where and how I should store them on a permanent basis.
Over there is the messiest, most disorganized catacomb of all. It's a portion of my life filled with misplaced dreams and disappointments. It has wires running to my gut that give me a swift shock when I look or think about it. It spans a vast chunk of bittersweet history that is still raw and makes me sad. I've yet to find the courage to venture near. It's probably one of those catacombs that will magically sort itself out a little bit at a time.
Over here in this well-ordered catacomb, way up on that shelf is an old trunk. It contains the memory of the first time I saw the Atlantic Ocean. If we get it down and open it up, you will smell the salt air and hear my father's voice telling me the story of our gritty ancestors facing the unknown in the 1730s as they boarded a ship on the other side of this great ocean bound for the new world.
Finally, this long catacomb over here acts as a laboratory where I have an ongoing love/hate relationship with the English language (El for short). El and I sit down rather frequently and try to work out our differences, but I must tell you while she is an alluring beauty she is terribly obstinate and inflexible.
When talking with others like me, I find that they, too, store personal history in categories and pull out what they need. Like me, they speak of looking for patterns and dots to connect in search of general understanding. They have built workshops and laboratories in their minds. Some think of it as a cabin in the woods, the attic in their childhood home, a palatial mansion, or just a massive set of drawers.
Past experiences seem central to neurotypical minds as well when filtering new situation or ideas. However, what I have found unique to dyslexic/difstypro minds I have spent time with is this need to picture the storage of memories, the visual components of working out tasks in an imaginary space, and the need to articulate problems and solutions using verbal analogies.